In ‘The Immortal Life of Henrietta Lacks,’ Rebecca Skloot describes how one woman’s cancer yielded a strange and important legacy

September 22, 2015

By Matthew E. Milliken
MEMwrites.wordpress.com
Sept. 22, 2015

Recently, I finished reading The Immortal Life of Henrietta Lacks, Rebecca Skloot’s 2010 nonfiction account of the personal and scientific journeys experienced by a Maryland women’s family and cells.

Lacks was the great-granddaughter of slave owners who grew up on what had once been a plantation in Southern Virginia. She died at Johns Hopkins Hospital in Baltimore in 1951 due to an unusually aggressive strain of cervical cancer. Lacks was only 31.

Her story, and her family’s story, might have been lost to history but for two reasons. One is that doctors at the hospital took a sample of the cancerous cells in her body, found that they grew prolifically and soon shared them widely with scientists around the nation and the world. The easily cultivated cells, dubbed HeLa, have been called one of the most important developments in medicine in the 20th century.

The other is that Skloot was taught what little was common knowledge about Lacks as a 16-year-old taking a community college biology class in 1988. The student never forgot about Lacks and occasionally searched for more information about her over the years. She became a science writer and ended up spending a decade researching The Immortal Life of Henrietta Lacks.

Skloot makes the science involved in cell culture easily digestible, as witness this passage:

Viruses reproduce by injecting bits of their genetic material into a living cell, essentially reprogramming the cell so it reproduces the virus instead of itself. When it came to growing viruses — as with many other things — the fact that HeLa was malignant just made it more useful. HeLa cells grew much faster than normal cells, and therefore produced results faster. HeLa was a workhorse: it was hardy, it was inexpensive, and it was everywhere.

And the timing was perfect. In the early fifties, scientists were just beginning to understand viruses, so as Henrietta’s cells arrived in labs around the country, researchers began exposing them to viruses of all kinds — herpes, measles, mumps, fowl pox, equine encephalitis — to study how each one entered cells, reproduced, and spread.

Henrietta’s cells helped launch the fledgling field of virology, but that was just the beginning. In the years following Henrietta’s death, using some of the first tubes of her cells, researchers around the world made several important scientific advances in quick succession. First, a group of researchers used HeLa to develop methods for freezing cells without harming or changing them. This made it possible to send cells around the world using the already-standardized method for shipping frozen foods and frozen sperm for breeding cattle. It also meant researchers could store cells between experiments without worrying about keeping them fed and sterile. But what excited scientists most was that freezing gave them a means to suspend cells in various states of being.

Freezing a cell was like pressing a pause button: cell division, metabolism, and everything else simply stopped, then resumed after thawing as if you’d just pressed play again. Scientists could now pause cells at various intervals during an experiment so they could compare how certain cells reacted to a specific drug one week, then two, then six after exposure.

Skloot expertly chronicles many of the key steps and missteps that were taken with the HeLa cells. These include a widespread contamination fiasco, a number of questionable research practices that existed before U.S. research organizations instituted stronger ethical codes — an effort that is ongoing — and lawsuits that went as far as the Supreme Court over whether a gene could be patented and patients could benefit from commercial products derived from their tissue.

Skloot’s book, while well-written, is not always an easy read. That’s because Lacks and her family endured seemingly endless privation and suffering over the years, including emotional and physical abuse, sexual assault, mental illness, crushing poverty and deep-rooted racism.

Skloot wrote the following about the difficult childhood of Henrietta’s younger daughter, Deborah (using the syntax employed by her interviewees):

Deborah asked Bobbette [her sister-in-law] what pregnant was. Bobbette told her, then grabbed Deborah’s shoulders again and told her to listen good. “I know your mother and father and all the cousins all mingled together in their own way, but don’t you ever do it, Dale. Cousins are not supposed to be havin sex with each other. That’s uncalled for.”

Deborah nodded.

“You promise me,” Bobbette said. “You fight them if they try and get with you — I don’t care if you have to hurt them. Don’t let them touch you.”

Deborah promised she wouldn’t.

“You just got to go to school,” Bobbette said. “Don’t mess with boy cousins, and don’t have babies until you’re grown.”

Deborah wasn’t thinking about having babies anytime soon, but by the time she turned thirteen she was thinking about marrying that neighbor boy everyone called Cheetah, mainly because she thought [her mother’s cousin] Galen would have to stop touching her if she had a husband. She was also thinking she’d drop out of school.

Like her brothers, she’d always struggled in school because she couldn’t hear the teacher. None of the Lacks children could hear much unless the person speaking was nearby, talking loud and slow. But they’d been taught to keep quiet with adults, so they never told their teachers how much they were missing. None of them would realize the extent of their deafness or get hearing aids until later in life.

Only in 1973 would the Lackses learn that cells from their relative were still alive; two years later, the publication of a Rolling Stone article informed the family for the first time that the cells had been commercialized. Another quarter-century passed before anyone affiliated with Johns Hopkins, which had taken and distributed samples of Henrietta’s cells without written permission, made anything more than a token gesture to acknowledge the debt that medical science owed the family. The bitter unfairness of these circumstances was compounded by the fact that many Lackses have frequently struggled to afford medical care over the decades.

Another unfortunate aspect of the situation is that few if any of Henrietta’s relatives were equipped to understand just what experiments were done with the HeLa cells, or whether any part of Henrietta retained consciousness or memories of the woman’s existence. “I don’t know know what they did,” Deborah Lacks told Skloot about the various HeLa experiments, “but it all sounds like Jurassic Park to me.”

Skloot’s book follows three narrative threads. In addition to the Lacks family history and the scientific chronicle of HeLa, she describes her efforts over the years to report the book. Understandably, given their experiences, many of the Lackses were initially hesitant to trust Skloot.

Ultimately, however, Skloot was able to learn things about the Lackses that even they themselves had not known, or had (in some cases) forgotten. The author uncovered a long-lost photograph of Henrietta’s eldest daughter, a seriously ill girl who died in an institution at the age of 15. Deborah, who had been told almost nothing about her older sister, was so transfixed by the image that she had trouble keeping her eyes on the road while she was driving.

The typical reader may not find The Immortal Life of Henrietta Lacks quite as amazing, but she is likely to be fascinated by this book. Skloot’s account is a crucial reminder that, despite all of the advances in civil rights and medical science, there’s still a great deal of progress to be made.

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